Tessa's heart cath

When we adopted Tessa in 2010 we knew she had a congenital heart defect.   We really did not know what it was, only that it had been repaired in China when she was about 4 years old.  We never received any information about the surgery and honestly, she was our daughter no matter what.  

So after we came home with this girl in September 2010, we took her to see a pediatric cardiologist to see what shape her heart was and if there was anything that we needed to watch.   We were really shocked after they did an echocardiogram and then wanted to do a sedated MRI of her heart.   Dr. Parthiban told us that it looked like Tcssa had Sinus of Valsalva.   This means she has an aneurysm of her aorta that, because we had no records from China, could mean they had tied that aneurysm off during her open heart surgery in China all those years ago.   So we monitored that area for 6 years.   She had an echo every year and this year we repeated the MRI.

So after the MRI this year, Dr. Parthiban decided that it was time to do a heart catherization on Tessa to really be able to "see" inside her heart.  They said that on the MRI, the aneurysm looked like it was pulsating with each heart beat.   The doctor wanted to do a heart cath to see if she was going to need to have a patch put on the aneurysm to keep it from bursting.   We have been keeping her out of contact sports since she came home because we were concerned that she might get hit in the chest or back really hard by a basketball or something and that aneurysm could rupture and according to Dr. Parthiban she would "bleed out quickly and die right away unless she was in a hospital when it ruptured"  It has always been a worry that we keep her safe but yet let her be a child and have fun.   So she did Taekwondo and played Volleyball.   She was never a fan of basketball playing anyway :) She has always loved to swim and that was a fantastic sport during the summer for her to be on the swim team...plus she is a very fast little fish :)

So November 7th we traveled to Children's Mercy Hospital early in the morning for Tessa to have her heart cath.   It was a school day, so her sisters had to go to school.    We left right after they left for school on the bus.   Dr. Kaine was supposed to do her cath, but he had called in sick that day.   They notified us of that just a few minutes before we left to go to Kansas City.   We asked if there was another physician who would be doing the cath and we were told that Dr. Abhay A. Divekar would be Tessa's doctor.   Her regular cardiologist does not do heart caths.

We are always impressed by Children's Mercy.   They have the kid stuff down to a science...guess that is why they are such a good Children's hospital.   Dr. Divekar was amazing and we were very impressed with him and his staff.   He came in and talked to Tessa and us and told us exacty what they would be doing and off they went. Dad and I went to the waiting room and began the long, to us, wait.

They are very good about calling every hour with an update and very soon after the first update they were done and the doctor and his APRN came down to visit with us and show us the cool photos of Tessa Louise JiXing's amazing heart.  So after all this time we find out that she does NOT have an aneurysm...Thank the LORD!   What it looks like to them is that she had a congenital aortic fistula that was tied off during her surgery in China.    Before it was tied off, her heart was obviously not pumping effectively and the blood was pooling in the right side of her heart.   Because of that, they did open heart surgery in China and tied the balloon in the artery off.   However they did discover that because her heart was not pumping effectively that she has smaller than normal veins on the right side of her heart.   She had a stress test performed and her and her heart did great.   

We will have to monitor her heart every year and she will start taking aspirin 81 mg daily along with watching her diet to keep her cholesterol low and exercise to keep her heart in good shape.   We have been blessed by this young lady and we are so glad to hear this wonderful news about her heart!   We love you to the moon and back!

Fall

This year has flown by.   It is so hard to believe that it is almost time for Halloween.   The girls and I traveled to Baldwin City last Sunday to go to the Maple Leaf Festival.   We have heard about this Festival since we moved here and we finally got to go!  It was 86 degrees and the wind was blowing and I managed to get my forehead sunburned.   

Baldwin City is home of Baker University and  there are lots of older, large houses in the downtown area we were walking through.   Many crafts that looked like fun to make and cool ideas.   

Some folks really like decorating for Halloween.   The girls posed in front of a house where it seemed like every evil person from the movies has come to live.

Many of the decorations actually were animated and quite gruesome.   And of course there were clowns!   Zora is not much of a clown person.  A couple of her friends came over one night during the clown fad and tried to scare her.   She was not falling for it!

It was a very beautiful day and I had a great time with the girls as later on that day they told me all the "fun" things they used to do as little girls.   I guess Zora had the younger ones convinced to sit in the closet and hold an egg in their hands because the egg would hatch.   Zora also liked to play teacher and make them do "Homework" so then she would print them off copies of coloring pages. She would also convince her little sisters to sit on the tricycle, in the back of the wagon and push them down our little hill for a ride.    The also used to "sneak" past their Dad while he watched TV with his headphones on.   No one can pry Dad from the TV when a good show is on :)    I am sure it wasn't that hard to sneak past him.    But it was funny to hear their stories.   Made me remember of when I was growing up and my friend's older sister would "make" us do things or "tell on us."   It is amazing when we are younger that we fall for that.   I told the girls that now they are "older" if any of their friends try to get them to do something they do not feel comfortable doing they can say,  "I had Zora as my older sister."  "I know better than to do what you are telling me."   

We were walking in the house and this caught my eye.   The weather has been so nice it was shocking to see a frog perched on our light outside of the garage.   He is getting quite fat eating all the bugs that are still flying around the lights at night.   He will be ready for winter and we are so glad he is here to cut back on the insects around our house!

Long overdue post. The heartbreak.

We were so excited.   We were going to finally, after many starts, turns and twists, add another girl to our family.   What we went through to get to this point was a roller coaster ride.

We had a girl come live with us from May 23rd, 2015 to August 7th, 2015.    We knew that she was having "issues" living with her family.   We were prepared to have a tween who may not be happy that she was with us.   She came off the plane with a big smile on her face and even though there were some bumps along the way...she fit in.   She fell into the middle of the girls and got along like she had been here for much longer than she was.   It was so very hard putting her back on the plane for her to go home.   She cried, we cried.   She kept in contact with us, unbeknown to her family, for at least a month.   She was begging us to call her parents and tell them that she wanted to come back and live with us.   We kept telling her that "She" was the one who would have to do that.   If "she" really wanted to come live with us, "She" was the one who needed to tell her parents that.   She was having contact with us and it was hard...we wanted to have contact with her, but we knew that she was going behind her parents backs to continue to reach out to us.   We felt like we were between a rock and a hard spot.   We wanted to keep communication open with her and keep her trust by not telling her family that she was contacting us, but we felt bad that we were not being open with her family.   That is why we kept telling her that "She" was the one who had to talk to her parents and tell them what she wanted to do.   We wanted to pick up the phone and call her parents and tell them what was going on, but at the same time we did not want to break her trust in us that we would not tell.   Her parents found out and the contact stopped.  

We continued on with our lives.   Then in December 2015, her family once again reached out to us.  Would we "want" her?   YES!   We rushed to get our home study completed for a domestic adoption.  There has been many changes since we had completed a home study.  Many more hurdles to jump and hoops to climb through.   What we was hoping would take a few weeks ended up taking over two months to complete.   Two days before we had the finalized home study...the family said that they decided she was staying with them "No matter what."   We were crushed.   We thought "Okay, we are done." 

Then a week or so later I was looking at Second Chances Adoptions on Facebo#k and saw a girl who was looking for a new family.  I contacted them and sent them a copy of our redacted home study.   The agency was SO excited!   They felt we were a "perfect" fit for this child!   We had to hurry and send them a retainer fee and then call our agency to update our home study to a girl between the ages of 9 to 14 years old.   We then got a call from Second Chances.   Seems that the placing family had forgotten to mention that this girl was upset at her adoptive father and the family did not feel a stay at home Dad would be a very good fit for her.   Wham!  Bam!   Just like that we were on the top of the roller coaster and then the ride was over!    The agency's director called and visited with Dad one evening and told us that they would contact us if they had any girls in the age range we were open to.   Said that they thought we were the perfect family for a child.   So we waited.   A few weeks later, I emailed the agency and asked if there were any girls who might be a good fit for our family.   All of a sudden the agency was telling us that "We would have to keep an eye on their website for any children who we might be interested in."   A completely different version of what the agency director told Dad on the phone a few weeks ago.   They all of a sudden now say that they don't have time to contact families privately about a child...as Dad was told.   Hmmm....they have our money, now let's just change the story.

So once again we think that "We are done."  Life goes on, school is out for summer and swim team is on!   Then our phone rings one day and an agency we had used to adopt before...had a child that was being dissolved.   Would we be interested?  

****Side note here........To the nasty anonymous people who leave comments on my blog....YES!  There are other families in this world who have had to make the most gut wrenching decision of their lives....TO Dissolve an adoption for the benefit of the CHILD and the FAMILY!   I am a firm believer that not all children find their forever family the first....or sometimes even the second time!   And to all who say "Well if this was a child born to you!"   Let me just say...IF this child had been born to us....THIS CHILD would not have all the trauma in their life that they have LIVED!   This child would have received the care they needed from the git go and not just a bandaid applied by an Orphanage!   They would have had their cries met and their needs attended to.    They would not just be left lying in a crib in an over crowded orphanage!   IF this child has been born to us....their lives would have been very different!******

Okay off my soap box for now...I just get very upset that anonymous commenters seem to think they know it all.   This is OUR blog...if you don't like what you read here....GO away!!   I am trying to keep an honest, open blog about OUR family's life.    If you do not agree with what we have done...that is your prerogative.    But this is OUR lives.

So yes, we were interested.    This girl was adopted from China 5 years ago and her needs were much greater than were disclosed or known by China.   (Seems to be an ongoing issue...but that is another post...someday maybe.)   BTW, this was not an illegal "rehoming" situation.   Each family had an attorney in each state.   Our attorney's were responsible for contacting the ICPC (Interstate Compact on the Placement of Children.) judge who insisted that she go to counseling before and after the placement and after meeting her, also wanted us to have at least two mandatory face-to-face meetings with her.   We had both of those meetings take place in less than a week and one half window.   It was a whirlwind!   

This was my post to a FB group about children who are being dissolved who are from China very soon after I had notified a "friend" about what we were going through at our house.   Someone was already advocating to find her a new home:

I am sure that my post will be deleted.   This child was in our home.  She was adopted at age 4 from China by a Chinese couple.   She lived with them for 5 years.   A LOT of information about this child was conveniently not disclosed to us.   We had 2 face-to-face meetings with her that were each less than 5 hours.   You can NOT know enough in less than 10 hours how a child will be in your house on a 24/7 basis.   While she has been in our home (since July 13th) she was seeing a counselor weekly, a psychiatrist, a pediatric endocrinologist, a pediatric cardiologist, had her eyes checked and got a pair of glasses and was seen by our pediatrician's APRN.   Our adoption was supposed to be finalized the end of this month.   We. Could. Not. Do. It!   It was not because of her medical needs...which are many but basically a breeze..it is because of her emotional needs.   I am sure you are all thinking we are just terrible because we contacted our attorney to stop the adoption process.   But until you have walked in our shoes, don't beg for what you think you want.   Our understanding is that her first family plans on getting her the help she so desperately needs.    But they lied to us from the start.   The child is completely happy that she is back home with them and she thanked us for all the fun she has had at our house.   I will not answer any PM's about this.  IF they are seriously going to dissolve their adoption of her AGAIN and someone is interested go in with EYES WIDE OPEN.   My other children, my husband and I will be having some much needed counseling after this.   She is beautiful, she is cute, she is bubbly...she needs a lot of help that we could not give.   We are crushed and heartbroken

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Yes, my post was deleted.   Yes, we are crushed and heartbroken.   Yes, we are struggling.   Then the day before she left our home, CPS was on our doorstep.   Seems someone had filed a complaint that we were verbally abusing her!?!    WTH?!!    Well, you could have knocked us over with a feather!   If anyone was being abused in our home...it was our other children because she kept telling them how much she hated them and how much she wanted to go back to her "old home."   She would not listen to anyone or follow the rules AT ALL.   What we were not told was she has RAD.  "Reactive attachment disorder (RAD) is one of the few disorders listed in the DSM-IV that can be applied to infants. It is a disorder caused by a lack of attachment to any specific caregiver at an early age, and results in an inability for the child to form normal, loving relationships with others. "   BTW the "complaint" as far as the social worker was concerned was "Unfounded!"   She read us the redacted complaint and the last sentence was...."And they take a vacation every year."   ????????  You have got to be kidding me?!!  And no we don't take a vacation EVERY year...and so what if we DO?!!!

A child with RAD needs a loving family.   A child with RAD needs lots and lots of counseling and treatment.   A child with RAD deserves a family who can completely commit to helping them overcome RAD....IF it is possible to overcome.   I know other families who have children with RAD and I know that they struggle EVERY DAY!   I have been told that Nancy Thomas has a program/book that helps.    "Emily" fits many of the symptoms of RAD.   We have five other children in our home.   A child with RAD deserves ALL the focus to help them overcome.   Or a family who has dealt with RAD successfully before.   We could not do it PERIOD!   

This is a photo of the girls the night before "Emily" met with her mother in KC.   She was excited she was going back home.   She thanked me over and over for packing all her things for her and all the fun she had at our house.   Yes, we did have some fun times.   However her behaviors were so out of our reach to help her.   We miss her.   We will pray for her and hope that she gets the help she so greatly needs.    I have been contacted by many families who are dealing/living with children from hard places.   It is not easy.   Many families struggle in silence because they are afraid of the repercussions of telling anyone what they are dealing with quietly at home.  These families need support!   They need respite care at times they are gulping for air.   They need people to understand that THEY did not cause this child to have RAD.   Until you have walked in our shoes and lived with a child who has RAD....you can NOT understand what it is like.   Bad behavior does not begin to tell you what living with RAD is like.   There is no consequence strong enough to make a RAD child understand that rules must be followed.   We were/are not equipped to deal with RAD.   She needs a family who can get her ALL the help she needs.   We are heartbroken that we can not.   

Now....I AM DONE!    Do I still want to adopt?  YES!   But contrary to further beliefs...we are NOT wealthy!   We live from paycheck to paycheck....living the American dream.    There are so many children's profiles on lists that pull at my heartstrings.   I want them all to have the right, loving family to live with.    But our family is still dealing with the stress one little girl brought into our home.   Like I said, until you have lived with such a child on a 24/7 basis, you can NOT understand!  The stress has carried over to my husband, my children and my job.   Some of my children want to "Move somewhere no one knows us."  So we can make a fresh start.   My body has had so much stress...I stepped out around a patient at work to get to a wheelchair to put the patient in so she would not fall and I felt my back "Pop."   I was sent to the ER where an MRI shows that I have bulging disks and degenerative changes...so now workman's comp is telling me that it is a "Pre-existing" condition and I can not be treated as a workman's comp case.   I had an epidural in my L4-L5 spine yesterday that hopefully will make my back pain better.   I am waiting for a phone call back from my doctor's office as to if I should return to work full time or if I should do some physical therapy or what?!   My back, my heart and our lives have been broken because we wanted to add to our family. 

So proud of this girl

Tessa came home from China able to do what most of us can't.   She could give 3 thumbs up!  She had two thumbs on her right hand.   This is usually associated with a congenital heart defect which she also had.    Her heart repair was done in China when she was about 4 years old.   She was found when she was approximately 2 years and 3 months old.   Such a beautiful little girl...and I am sure very sad and scared.   This was the day she entered the orphanage according to our records.

She then had surgery on her heart.   Which we did not know for sure exactly what they did....that can be frustrating.   We know that she had a hole in the lower chambers of her heart that they repaired.  However we are not sure if she had something wrong with her Aorta that they repaired or if she has a defect to it.   On the Echocardiograms and MRI's of her chest, the pediatric cardiologist, Dr. Anitha Parthiban, who we have been seeing since Tessa arrived home, thinks that her aorta might have been tied off during her surgery in China.   However, there is an aneurysm there that we have monitored every year since she came home.   It is called a Sinus of Valsalva and the doctor has monitored it very carefully.   She has recommended that Tessa not play any contact sports where she could get a direct, hard hit to her back or chest as if that area were to rupture...it would be catastrophic :(    Not a good feeling knowing that.   

On her last visit with Dr. Parthiban the doctor said that she is going to present Tessa's case to her panel of other pediatric cardiologists to see what they suggest to do.   If we should just watch it or if we should become more proactive and maybe do a heart cath or open her chest to make sure that it is okay.  

Three years ago Tessa decided it was time to have her extra thumb removed.   We had told her that if she wanted to have the surgery to have it removed, just tell us and we would set it up.   That time came.   She was such a trooper about the whole process.   Tessa and I had to be at the hospital very early in the morning for her surgery so we spent the night in Kansas City. 

She had a pretty red cast on for almost 6 weeks.   Then they put another cast on for a couple more weeks.   Tessa was not too fond of the noise the saw made when cutting the cast off.   And from the look on her face, I am not sure she was really pleased with the new thumb...which of course was still swollen and healing.

The orthopedic surgeon said that it was a good thing we had it removed when we did as one thumb would have grown and the other would not.   That would have made them different sizes.  As it was, the very end joint by her fingernail is fused, it does not move.   This had to occur because the bones/joints in the two thumbs were pretty messed up.   So the physician did what she could to give Tessa as normal of thumb as she could.

Our girl is a fighter.   She is an angel wrapped in a small body.   She is not only beautiful outside she is beautiful inside as well.   We love you Tessa "Louise" JiXing....to the moon and back!!

Summer is over...school is on!

So on this rainy morning there were sounds of girls moaning and saying "It is too early to get up!"  Yes, it is the yearly get out of bed and go back to school call.   Not a call for sissy's.   Several were up before 5:30AM so they could take a shower and make sure they had all the right things in their book bags.

It was raining cats and dogs....no Pugston was not hurt....when they ran out to the bus.   I tried to keep up with them, but did not want to get my lens wet.   There was supposed to be Mom and Dad out in the driveway kicking up our heels.   We were concerned we may slip and break something so we calmly watched the bus back out of the driveway and then it was lights out...for Dad.   Mom stayed up and posted to Faceb#ok and then also went back to sleep.

Mom did do a little dance on the loveseat.   It was so peaceful here today.   It was the first lazy day I have had in a long time.   Should have done so many things....tomorrow!

Dad and I were both waiting in the driveway.   The bus usually gets home before 4PM.   It was the first day of school and not surprising that it was almost 25 minutes late.   I can not imagine the fun the teachers have the first week or so making sure that all the kids are in the right lines to get on the bus, get picked up from school or walk home.   I only have 6 to keep track of....blessings to teachers and their ability to wrangle many, many more :)

They came off the bus, one by one, some happy to be home, some happy that school was over, and some not so happy?   Oh well, can't win them all.

Dad also made a couple of sticky purchases lately.   Sticky...as in magnetic signs.   These are on the van.   We hope that someone will see the signs and be a little more patient with our new drivers of the house.

How things are going at home

So we have been home a while.   We hit the ground running.  Not only did Mom have to go back to work full time, Emily had a lot of things to have done before school starts.   She has had her eyes checked and she does need glasses.

She spent an hour at the school doing tests to see which grade she should be in.   It was decided that she should be in 3rd grade.   She struggles in reading and math.   She was very excited to find out that she will be going to a different school than her sisters.   So even though they will all get on the same bus in front of our house in the morning and arrive home on the same bus in the afternoon, she will get to take a different bus than her sisters to "her" school.   We were then very excited to find out that she will have Mrs. Colvin who has taught many of our other daughters!

She has also been going to counseling.   She is grieving heavily for her former family.   She has been doing many, many "bad" things to try and get us to send her back.   It has been a very frustrating adjustment for everyone.   Her sisters feel very bad that she can not "go back" like she wants to and we feel we are breaking her heart telling her that she is not going back.   We keep reminding her that she is here FOREVER and she seems to understand that, but still can not stop herself from doing things that she thinks will make us want to send her back. :(   She wanted siblings...and now has decided that she wanted younger siblings so she could be the BOSS.   She does not like rules and so she wants a family who follows HER rules.    We were having contact weekly with her former family but then each week she would think of more things to do so we would send her home.   So for now we have stopped the facetime visits.   When our other girls were adopted, they were immediately taken away from the orphanage and all the things that they were familiar with.   That is the way adoption from China happens.   For infants, it is sometimes easier because they depend on a Mother and Father to do everything for them.   As long as a baby is getting a bottle and their diapers changed they can kind of "go with the flow".   For older kids, it is tough.   Jordis was not at all happy to know she was going to a hotel with Zora and I.   She was excited to meet us, but when the orphanage staff took off without her...she was NOT a happy camper.   I had to carry her kicking and fighting from the Civil Affairs Bureau office.   She then fell asleep in the taxi back to our hotel and when she woke up with the hiccups, she seemed to not look back.   She did still pick on her big sister Zora by throwing away her shoes one night and then biting her another day.   True siblings to this day :)

Tessa was 6 years old and she also had not been told she was going to be adopted.   When she walked up to us in the office she was a sullen, sad little girl.   She begged our guide to take her home with him rather than go her sisters and I.   Then when he told her that was not possible she cried and cried.   I also carried her out of the office, crying, kicking and screaming.   I then carried her from the van into our hotel room.   She then sat on the floor by the door and told me something in Chinese.  Maybe it was "Go away or let me go?"   I am sorry I don't speak Chinese.   Then her big sisters, RaeAnne and Zora, got her interested in playing with her Nintendo and showing her photos on the computer and she was okay for the next two weeks to hold their hands and go with them.   She still did not want to have anything to do with this old mom until we left China and went to Hong Kong Disneyland where she quickly started calling me "Mom" like her sisters and asking me to buy her things at Disneyland :)

So things are so much different for Emily.   She has been in the United States for 5 years.   She speaks English and fluent Chinese.  She said she understood that she was coming here to live with us forever, but since her behaviors are to the extreme, she has not made fast friends with her siblings.   She has actually done the opposite...she has somewhat alienated herself from them because she will not listen to them when they correct her.   She tells them they are not her boss even though Mom and Dad have told her that they know the rules and she should follow the rules.   So when her sisters tell her to stop chasing the cat, she will not stop.   So her sisters try to protect the cat and Emily will shove and push and try to get around her sisters to get to the cat.   Then if she does not stop her bigger sisters will try to hold her from chasing the cat.   Emily then kicks her sisters...one day Tessa held Emily from behind with her hands on each of Emily's arms and Emily was still pulling away from Tessa.  Tessa stepped up closer to Emily and then Emily threw her head back and hit Tessa in the mouth...causing Tessa's bottom lip to clash into her teeth.  Tessa received a very large cut on her bottom lip :(      Emily did not do it on purpose, but she would not stop chasing the cat and will not listen to her older sisters to stop.   So Mom and/or Dad have to be here ALL the time to moderate. We are here all the time...but taking a bathroom break sometimes causes issues.  Then Mom works and Dad has his hands full.

We have had many family meetings and have explained to all the girls that Emily needs to learn and follow our rules.   Emily tells us she will follow the rules and that she WILL listen and do what her sisters tell her because they are older and know the rules, but she then will not follow through.   We are working on this EVERY. SINGLE. MINUTE.  

One thing that Emily does is become a growling animal.  She will growl and bark at us.  When we ask her why she is doing it...she explains, "Because if I am an animal you can not tell me what to do because I will bite you."   We have told her even though she is growling and barking...she is still a little girl and that will not work.   One morning she took a book I have been reading and hid it.  When I started looking for the book she said she did not know where it was.   It didn't take much to figure out she was the only person that was in the bathroom where the book had been just an hour before.  So when asked, she finally showed me the book.   She had taken it from the bathroom and had wrapped it up inside a magazine and had it hidden on the couch under a blanket.   When I asked her why she took it, she first told me so that if she was bad I would send her home and then because she wanted to read the book herself.   The book is not age appropriate and her reading skills are not enough that she would be able to read and/or understand the book.   So then we have to take away her priviledges which include her computer, her I-pad and her Game Boy.   She does not like when this happens but yet we are struggling with having her follow the rules so she can regain her fun things.

She loves to swim and has spent many hours at the pool.   We will enroll her in swimming lessons next summer, but for the time being she puts on a life jacket and paddles around with her googles on.  It was really hard for her to understand one night while we were at a night swim why we had to get out of the pool when it was lightening.   She was disappointed that the swimming pool closes when it is lightening...her thought was "When the lightening comes, we will just duck under the water!"  Dad explained to her that lightening is electricity and you will "fry" under the water.   She was still upset that we had to go home.

We have had her to see a pediatric Endocrinologist at Children's Mercy in Kansas City.   She has Turner's Syndrome and gets daily growth hormone shots.  She is currently wearing a size 4T and this is after growing a foot in the last year since she started the injections!  Tiny, but very mighty!   The doctor is Chinese and they had quite the conversation in Chinese.   Dr. Yan says that Emily is very intelligent and told her that she needs to follow the rules at her new house.   Emily told her that she would try.   She had bone x-ray of her wrist and it shows that her growth age is 8 years and 9 months which is very good.   She will be 10 years old in February.   She also had blood drawn and everything was excellent!   She will go back to their Turner's Syndrome clinic in November to have her ears checked as she does have some hearing loss.   The clinic is for the whole family to learn more about Turner's Syndrome and there are all kinds of arts and crafts for the kids to do for several hours during the morning and a lunch and learn for the parents.   We hope this will help our whole family understand what makes this little girl tick much better.

As her sisters are older and more sedate, Emily gets bored easily.   She can only watch so much PBS kids and the shows her sisters watch are too much older for her to really comprehend.   So Mom has been finding more outside things for the girls to do this year.   We pulled weeds one night to help burn off energy and work up our appetites for dinner.   Not too many enjoyed this activity :(

Yesterday was so beautiful the girls got all our bikes and scooters out and laid a little rubber in our driveway and down our gravel street.   We need to find a good bike repair shop and have some tires fixed.   Fortunately we have an air compressor so we can air the tires up when they go flat.   Of course, this activity was frowned on by our couch potatoes and thus it only lasted about an hour.  

Our social worker has been here and we will have another phone post placement report before we will finalize our adoption.   We also changed the venue of where the adoption will be completed to our local county courthouse so we can make it a family affair.   Will post more on that as it is happening.    

Emily has also seen a special counselor and they are looking into medication to help her focus her attention.   She is like a butterfly flitting from one flower to another.   She in 5 minutes can have her computer on, the TV on, her Game Boy on, the I-pad on and be chasing the dog or cat.   So she then loses a few electronics and we try to focus on doing one thing at a time.   We are concerned that she will not be able to focus and learn in school if she can not sit still for more than a minute or two.   We have to be careful with all the medical needs she has with her TS.   So our team of doctors are all working together to see what they can do to help her.

She had chosen to sleep in the top bunk bed in her room, but we had to move her down to the bottom bunk as she was bouncing too much in the top one and we did not want her to break the bed.  So yesterday Mom washed all the bedding and we remade the beds with all the blankets for winter and a special new blanket for Emily.   They were pretty happy after their beds were made last night :)